Thousand tooo ashamed to speak out

Thousands of dementia patients are hiding symptoms from loved ones and doctors because they are ashamed, a report warns.

It compares the stigma to that of HIV and Aids in the 1980s and says as many as a quarter of those suffering are refusing to speak out.

Doctors say patients tell them how their friends ‘disappeared’ after they were diagnosed and in some cases how their own children have stopped visiting.

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A joint report led by the Medical Research Council warns that this ‘unacceptable stigma’ is denying patients vital help and resulting in them being ‘marginalised’ from the rest of society.

Around 850,000 patients in Britain are thought to have dementia but only half have been given a proper diagnosis. The Government is urging GPs to improve their detection rates over concerns that victims and their families are struggling in silence.

But part of the problem is that many patients are too afraid to be diagnosed so do not make an appointment in the first place.

Professor Hugh Perry, chairman of the neuroscience and mental health board at the MRC, said: ‘The embarrassment and shame of having a disease associated with both age and mental health is a real barrier to people seeking the help they need.

‘A long time ago there was a stigma attached to cancer and more recently HIV. In both cases it stopped people from getting treatment and that’s sadly the case with dementia.’

The report is based on in-depth interviews of patients with dementia, their relatives, specialist doctors and academics.

'PEOPLE DON'T WANT TO KNOW' 

Sylvia Kahn, 77, a retired solicitor, was diagnosed with dementia three years ago.

She said that since then people ‘don’t want to know’ and often ‘turn away’.

The grandmother, who lives with her husband Bob in Warrington, Cheshire, said: ‘Those of us with Alzheimer’s are often deeply hurt when people are afraid to talk to us.

‘Why should you stigmatise us? We didn’t ask for the dementia. It’s not a crime.’

Mrs Kahn decided to leave her job after being diagnosed with Alzheimer’s following a series of memory scans in 2011.

With her husband she now works for the Alzheimer’s Society giving talks and helping raise funding for the research.

It describes how patients’ friends and close relatives often distance themselves and don’t ‘dare ask’ how they are. In some cases, the report warns that patients’ own children stop visiting them because the deterioration is ‘too hard to watch’.

And it also cites figures from a study in 2012 involving 157 dementia patients which found one in four had tried to hide their symptoms from family and friends.

George McNamara, head of policy and public affairs at the Alzheimer’s Society, which was also involved in the report said: ‘We’ve come a long way in terms of raising awareness but we still need to do more as a society to banish the stigma surrounding dementia once and for all.’

In a forward to the report, Professor Alistair Burns, a Department of Health expert on dementia and Baroness Sally Greengross, chairman of the All-Parliamentary Group on dementia, write: ‘We still have much to understand about why dementia remains outside the realm of acceptable conversation.’

Early symptoms of dementia include loss of memory, difficulties concentrating, depression and confusion. Certain drugs including donepezil, rivastigmine and galantamine can temporarily halt the decline but only if given in the early stages.

Last year David Cameron pledged to make dementia a national priority and said there would be a cure by 2025. The Government has also promised that by next year doctors will have diagnosed two thirds of all patients with the illness.

Recent estimates show diagnosis is as low as 45 per cent and in some areas as low as one in seven.

Last week it emerged NHS officials were planning to pay GPs £55 for every new patient diagnosed with dementia between now and March.

A Department of Health spokesman said: ‘Real change is needed, that’s why we are working with the Alzheimer’s Society and Public Health England to help tackle stigma and increase understanding.’